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And They Said This Was a Gay, White Male Disease

September/October 2003

The South is known for many things. Some good, some bad. Among them, the assassination of John F. Kennedy, Juneteenth, good manners, big hair, and the Bible belt. In addition, the South is now known as having the highest incidence of HIV-positive women. In a book entitled You're the First One I've Told -- New Faces of HIV in the South coauthored by Kathryn Whetten-Goldstein and Trang Quyen Nguyen, the authors state people newly diagnosed with HIV/AIDS today are more likely to be female, young, heterosexual, a racial minority and living in rural areas than in the past. They write, "we have more females infected, and we look like less-wealthy countries in Africa. HIV is much more prevalent among very poor and African-American Southerners." I can't imagine the South wants this distinction.

According to the CDC (Centers for Disease Control and Prevention), the Southeast has had the highest increase of new HIV/AIDS cases among all regions in the country since 1993. Pandora Singleton, Founder and Executive Director of Project Azuka in Savannah, Georgia established her organization nearly 10 years ago. She says, "I never thought I would see this. When I first opened Project Azuka, it was sad to see five new clients a week. Now I may have five new clients a day. It's difficult. It's generational." Charles Seabrook of the Atlanta Journal-Constitution wrote in a recent article, "While the South represents a little more than one-third of the U.S. population, it accounts for 40% of people who have AIDS and 46% of new cases."

Southern cities, including Atlanta, represent 18 of the top 25 U.S. metropolitan areas hardest hit by the AIDS epidemic. These states also have large numbers of African Americans who are poor. Seven of the 10 states with the highest AIDS rates are in the South. Georgia's AIDS rate -- 20.8 cases per 100,000 -- is the sixth highest in the nation. The statistics clearly show that in many parts of the United States, HIV has become a disease of people of color, women, and the poor.

There are several opinions as to why the rate of infections is increasing in African Americans. In Arkansas, officials say, "the rising infection rate in the black community is an information problem. Blacks who thought HIV was a gay, white male issue are showing up in hospitals with AIDS." Others say that stigma and denial are not the reasons for the rise of HIV/AIDS cases in the black community. With nearly one in four blacks living in poverty, according to the CDC, black people have limited access to health care. According to a report issued by the Southern AIDS Coalition, the South is more severely plagued by HIV/AIDS because of racial and economic differences and a conservative cultural attitude that interferes with attempts to halt the disease.

The reasons are numerous as to why HIV has reached epidemic proportions in the African American community. In the end, there is such stigma attached to HIV that many do not want to talk about it. It's too scary. "We must demystify HIV among women of color," says Kim Anderson of AID Atlanta. "In order to normalize HIV among women of color, we have to create campaigns that communicate to women of color that HIV is an issue for them. We have to represent HIV in a way that breaks [down] the barriers around people knowing their HIV status. HIV must become a topic that people are able to discuss in the same way they discuss hairstyles and makeup. We are a long way from this level of comfort."

One of the most difficult misnomers to correct is the idea that HIV is a gay, white male disease. Anderson says, "White, gay disease is old school thought." Yet consistently African Americans seem to be surprised upon learning they are HIV positive. Singleton states, "Women consistently come in to care with an AIDS diagnosis." The puzzling statement, "I'm not gay. I'm not white. How did I get this?" These questions are often followed by distrust of the test results. Many people will be tested over and over again, because they cannot believe they are infected with HIV.

There are communities of people that have made erroneous decisions because they believed they were exempt from the horrors of HIV. Many people have died and continue to die because far too many African Americans have difficulty accepting that they are at risk for HIV. The reality is that HIV has always been a disease that impacts everyone.

Government and private sources often follow trends of HIV infection when it comes to funding prevention and educational programs. The drawback is that in following trends, inevitably some group will be eliminated. While one group is off the radar, they may continue to participate in behaviors that put them at risk for HIV infection. Without realizing it, we say to people that they are no longer at risk. It sounds crazy, but we live in a society where people are constantly looking for ways to escape. The consequences are too grave to continue doing this.

What is happening to women in the South is an example of the dire consequences of focusing on one group over another. HIV has to be marketed with specific populations in mind. Even though we presently have large numbers of women who are becoming infected, we cannot ignore the fact that anyone can become infected. The prevention messages should indicate that no one is exempt from the risks of exposure to HIV. If you choose to have unprotected sex or share needles, you are at risk for HIV infection. Anderson says, "we must provide access for women to be tested." One way, she says is to get the medical community to discuss HIV when a woman has her yearly gynecological exam. Often women think they are being tested for HIV and they are not. The healthcare provider should explain the test and offer testing to the woman at the time of her exam. This way, any woman can regularly be tested for HIV. This epidemic will never end as long as there are people who do not know their status. There has to be a way to focus on the education and prevention needs of a community while ensuring that everyone is aware they are at risk for HIV. The message needs to be clear: your color, gender or sexual orientation will not protect you from HIV.

Traditionally in African American communities, especially in the South, sex is often not discussed. The message that is communicated in relation to sex is one of shame; shame for wanting to share yourself with someone you love. The cultural issues around how we respond in relationships keeps us from talking about sex. Parents often talk to their daughters about how they should be submissive to their mates. Early on many women learn that they are to please their mates, not question; simply follow. Because women are normally not taught how to take care of themselves within a relationship, they are often unprepared to discuss condom use or someone's sexual past.

Another message traditionally directed at women is that sex outside of marriage is a sin. Irrespective of your personal belief, everyone should be provided with the skills to make appropriate and healthy choices. The attitude that sex is a sin only increases the need for secrecy. In silence HIV is spreading throughout the South. HIV in the rural South is growing faster than any place in the nation. The entire Southeast has the highest number of people infected with HIV. In six Southern states -- South Carolina, North Carolina, Georgia, Alabama, Mississippi and Louisiana -- 25 percent of those infected are African-American women, a Duke University study found. This figure is significantly higher than the national average.

In spite of the staggering numbers, silence still permeates the South.

In the deafening silence, lack of access to medical services, poverty and fear continue to contribute to the alarming numbers of African Americans with HIV. The fear of losing your community, friends, and relationships keeps many African-American women in the dark about their HIV status. For many the risk is too great. The African American community's ignorance and lack of education surrounding HIV causes individuals to be kicked out of their homes, treated cruelly and lose the love and support of people they have known their whole lives. In Savannah, Project Azuka has a number of programs to deal with the fear of HIV. Executive Director Pandora Singleton states, "we need to keep saying it over and over -- there is such a fear about having HIV and that fear cripples people. Having HIV is so crippling for women that they can't talk about it."

In addition, we must get African American leaders to discuss HIV. It is not about who you have sex with or what kind of sex you have. Singleton has been writing letters to Oprah Winfrey regularly for a number of years concerning HIV among women in the South. However, she says, "I have yet to get a response ... [but] there is something to consistency." When asked what her message to Oprah is, she replied, "You have made a lot of money and have helped some people get on their feet. Now it is time to take some chances. It's time to help a sister live." Anderson echoes this need for Oprah to discuss HIV and its impact on women in the South. "We have to begin to discuss HIV as a health issue. Until the greater community embraces this, African Americans will continue to become infected and die. Just as they are doing in Africa," she asserts.

The epidemic in the rural South has similarities to that of the epidemic in Africa. According to the CDC (Centers for Disease Control and Prevention) 75% of women in the U.S. were infected through heterosexual sex. Of newly infected women, approximately 64% are Black; in Africa, as much as 80 percent of the transmission is through heterosexual sex. In Africa, people travel to different villages or cities to be tested and receive medical care because they do not want to risk anyone in their communities finding out they have HIV. Many in the South will travel hundreds of miles to see a physician. They travel because they do not want to risk anyone in their community knowing they have HIV. The similarities between Africa and the rural South go deeper than these two issues. There's a great stigma here attached to the disease, a sense of fatalism that it doesn't matter what they do.

In spite of the wealth of our nation, the people in the rural South are less likely to have access to medical care. Recently the CDC issued a new initiative that would allow women who were pregnant and women who were having gynecological exams to opt out of testing for HIV. The goal of the new initiative is to find the people who do not know their HIV status. Testing for HIV does not equal access to care. The flat funding by our current administration and the waiting list for AIDS Drug Assistance Programs (ADAP) around the United States will cause already resource poor areas to suffer even more. For many in resource poor communities, ADAP is the only means of getting medications and Ryan White programs are their only means of accessing medical care. If someone does find out they are HIV positive, there may not be resources to provide direct or support services. We must get involved. We need to stand up and represent ourselves just as gay men did early on in this epidemic. If we do not, we will lose out and that is very scary.

Anderson made a future projection. "In Africa, we are concerned about the loss of an entire race of people from HIV, if we do not do something soon, in 300 years, we (African Americans) will not be here." In protecting the secret, we infect others and still do not tell. The thought of a race of people disappearing is not acceptable. HIV is preventable. It is an illness that people can be educated as to how to reduce their risk of infection. The prevention messages to people living with HIV as well as those who are HIV negative must represent the different communities in the United States. The messages must include issues unique to the targeted community. If you are trying to reach women in the rural South, then your campaign must include women who look like women in the area, and dealing with issues the women are dealing with.

Talking about HIV in our everyday lives is one way of demystifying this epidemic. Everyone has the responsibility of educating themselves about HIV and then educating someone else. No one should have to hide the fact that they have HIV because they are afraid their community will not embrace them. As long as we encourage people to keep secrets, we will continue to die. That, my friend, is unacceptable.

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This article was provided by Positively Aware. It is a part of the publication Positively Aware. Visit Positively Aware's website to find out more about the publication.
See Also's HIV/AIDS Resource Center for African Americans
HIV and Me: An African American's Guide to Living With HIV
More on African Americans and HIV